Recently, industry and community patient advocacy pioneers came together for the Chief Patient Officer Summit. Though the title is rare, having a leader highly placed within a biopharmaceutical company solely responsible for integrating patient perspectives is no longer Pollyanna. In the context of the dueling, incongruous dynamics of patient empowerment, cost-sharing, and indisputable disparities, it’s strategic, ethical, and intuitive.
Early into the conference, Jean Campbell, Co-founder of Professional Patient Advocates in Life Sciences (PPALS), explained the basis for PPALS with a nod to Rodney Dangerfield: “It’s because the advocacy function got no respect.” That was 2014. Today, the function has grown significantly, along with the practice of listening to, learning from, and meaningfully partnering with patients throughout drug development and commercialization (aka “patient voice”).
The key conference takeaway: To be successful in this role, you must know your business and the patient community you serve very well, which is no small task. To do this, you need to understand yourself quite well too.
Where patient voice and advocacy efforts sit within a company is a hot topic. Except for ensuring appropriate firewalls, the consensus from the stage was it’s less about where the function sits or if it reports to the CEO and more about the fact that internal success hinges on cross-functional knowledge, trust, and influence.
Whether infusing patient input into trial design and recruitment strategies or supporting product launch and access, longtime pros shared similar advice: always point back to a defined strategy, secure sufficient budget to be impactful, continuously educate and motivate your colleagues, and operate in tandem with immutable timelines.
While regulatory guidance and industry collation roadmaps have propelled efforts, barriers persist. To address these, speakers emphasized the importance of clear CEO endorsement; problem-solving early with legal, regulatory, and compliance; amassing evidence from industry analogs; and tapping into external partners with a line of sight across multiple approaches.
Partnerships with patient advocacy organizations (PAOs) are critical to this role, and speakers pointed to tenets of good engagement such as avoiding transactional engagements, engaging often and transparently, and honoring organization history and priorities. These fundamentals have not changed; however, now a heightened focus is not just on how we engage, but with whom.
Whether its big pharma working with advocacy groups or biotech working with smaller organizations, it’s indisputable that industry’s most trusted PAO partners shaped policy and catalyzed research in ways that have led to significant improvements in many lives. It’s also indisputable that the magnitude of health disparities gaining attention in recent years has accelerated efforts around diversity, equity, and inclusion (DE&I) industrywide.
The elicit conference question became: Are the PAOs we have worked so hard to build trusted relationships with equipped to expand their reach and become meaningful resources and partners in communities historically at the margins?
The case for finding new ways to address health access barriers, including insurance, treatment, clinical trials, and, relevant and actionable health information, is crystal clear and has not gone unnoticed by PAOs large and small. I believe the lion’s share of these organizations are actively looking to do better when it comes to inclusivity. Yet many have been founded and led by people with higher-than-average accesses to resources and centered around white, cisgender middle class experiences. These dynamics, coupled with a deeper appreciation of how social factors/biases have led to mistrust among communities historically at the margins of industry and PAO efforts, make this question even more critical to defining strategic paths forward.
Industry can work with existing partners as they expand their capabilities and reach, while also moving from pilot to operating practice when it comes to opening the proverbial tent to new partners organized around health equity, race, ethnicity, and gender. As referenced by multiple speakers, local expertise is critical here, which makes the case for field-based advocacy teams. Industry also has an opportunity to help create bridges between organizations steeped in therapeutic areas with others who understand the needs and priorities of specific communities. Another untapped opportunity is for technology to advance DE&I goals, yet it’s critical to simultaneously examine and address digital health gaps.
GSK’s Sherrita Dorsey began her session stating, “Where you stand depends upon where you sit”—the idea that we’re shaped solely by what we see and experience. Amicus Therapeutics’ John Crowley emphasized the importance of optimism in leadership, which is especially salient in our industry where optimism can be tough to maintain. These perspectives matter in how we navigate this role in a space where hope and progress intersect frequently with pain and suffering.
Securing a real seat at the table and ensuring that patient voice is fully integrated is an ongoing process. Several speakers referenced this role as the “conscience of the company.” That’s a heavy burden to take on, especially within a flawed healthcare system. The bottom line: you cannot do it alone. Build a diverse mix of allies internally and externally, understand the limits and value of your own perspective and take care of yourself along the way.